Losing our memory is something we all fear, including our senior loved ones. We want to stay as sharp-minded as possible as we age and hope that our senior loved ones do as well.
We are now realizing that some of our personal habits can influence our cognition as we age.
Even when our senior loved ones make lifestyle changes for prevention of memory loss, unfortunately, they can still get diagnosed with cognitive loss and their caregivers will need solutions to help with caregiving.
Unpaid caregiving for people diagnosed with Alzheimer’s disease and related dementias continues to grow and is currently estimated by the latest Alzheimer’s Association Facts and Figures report to be a total of 16.1 million people. These family caregivers provide 18.4 Billion hours of care to the tune of $232 Billion a year.
What do family caregivers of people with dementia need and want from caregiving support?
Principles of Good Dementia Care
Good dementia care for families has been studied by researchers and their findings were summarized into 14 components.
These 14 components, or standards, were created using scientific evidence and expert opinions, including recommendations from the U.S. Department of Health and Human Services (HHS) Agency for Healthcare Research and Quality National Guidelines Clearinghouse, discipline-specific professional associations, and Alzheimer’s Association recommendations for health care professionals.
All members of the team will contribute to one or many of the fourteen components including family, the person with cognitive issues, healthcare providers, health professionals, end of life specialists, pharmacists, direct care workers, and anyone involved throughout the span of the disease.
- Detection of dementia – Examine for cognitive impairment when there is a decline from previous function in daily activities, occupational ability, or social engagement.
- Diagnosis – Obtain a comprehensive evaluation and diagnosis from a qualified provider when cognitive impairment is suspected.
- Assessment and ongoing reassessment – Assess cognitive status, functional abilities, behavioral and psychological symptoms of dementia, medical status, living environment, and safety. Reassess regularly and when there is a significant change in condition.
- Care planning – Design a care plan that will meet care goals, satisfy the person’s needs, and maximize independence.
- Medical management – Deliver timely, individualized medical care to the person with dementia, including prescribing medication and managing comorbid medical conditions in the context of the person’s dementia.
- Information, education, informed and supported decision making – Provide information and education about dementia to support informed decision making, including end-of-life decisions.
- Acknowledgement and emotional support for the person with dementia – Acknowledge and support the person with dementia. Allow the person’s values and preferences to guide all aspects of the care. Balance family involvement with individual autonomy and choice.
- Assistance for the person with dementia for daily functioning and activities – Ensure that persons with dementia have sufficient assistance to perform essential health-related and personal care activities and to participate in activities that reflect their preferences and remaining strengths; help to maintain cognitive, physical, and social functioning for as long as possible; and support quality of life. Provide help as needed with medication management and pain control.
- Involvement, emotional support and assistance for family caregivers – Involve caregivers in evaluation, decision making, and care planning, encouraging regular contact with providers. Provide culturally sensitive emotional support and assistance for the family caregivers.
- Prevention and mitigation of behavioral and psychological symptoms of dementia – Identify the causes of behavioral and psychological symptoms, using non-pharmacological approaches first to address those causes. Avoid use of anti-psychotics and other medications unless the symptoms are severe, create safety risks for the person or others, and have not responded to other approaches. Avoid physical restraints except in emergencies.
- Safety for the person with dementia – Ensure safety for the person with dementia. Counsel the person and family as appropriate about risks associated with wandering, driving, and emergency preparedness. Monitor for evidence of abuse and neglect.
- Therapeutic environment, including modifications to the physical and social environment of the person with dementia – Create a comfortable environment, including physical and social aspects, that feels familiar and predictable to the person with dementia and support functioning, a sustained sense of self, mobility, independence, and quality of life.
- Care transitions – Ensure appropriate and effective transitions across providers and care settings.
- Referral and coordination of care and services that match the needs of the person with dementia and family caregivers and collaboration among agencies and providers – Facilitate connections of persons with dementia and their family caregivers to individualized, culturally and linguistically appropriate care and services, including medical, other health-related, residential, and home and community-based services. When more than 1 agency or provider is caring for a person with dementia, collaborate among the various agencies and providers to plan and deliver coordinated care.
What Do the Components Mean for Family Caregivers?
Family caregivers who detect a change in the mentation of a senior loved one are usually the first ones who see a difference and begin seeking information and a reason for the changes they observe.
At this point, there are no groups or agencies assessing or screening the general population to determine whether there may or may not be cognitive loss to meet component number one.
Most family caregivers become suspicious and seek out answers from their medical provider which will begin the caring continuum under number two — diagnosis.
Experts in the field of dementia, especially clinical trial researchers, wish that the diagnosis could be made earlier in the disease process to make a difference in the trajectory of the disease and allow families time to make crucial decisions before cognition inhibits expression of wishes.
Perhaps a more general screening program would be helpful for family caregivers to be proactive about dealing with dementia.
The remaining components are good ways for family caregivers who finally receive a diagnosis and are referred to community programs to evaluate different programs available and make choices in their care.
Does a program fulfill some or all of the components especially essential to your family? For instance, is your senior encountering behavior issues or do you fear for their safety?
Would a home visit by an occupational therapist help you find ways to improve the independence of your senior loved one to complete their own activities of daily living such as personal care?
Do you need financial resources or more caregiver training? Can you request it from your medical team or get referrals to help you fill any gaps in caregiving?
Do they offer respite so family caregivers can practice self-care?
Will they review medications to be sure there are no contraindicated medications being prescribed as some medications should not be used for people with dementia?
Does the program offer dementia training to all staff in contact with the person with dementia or just hands on care staff?
Do they support you as family caregiver?
Expert Evaluations of Programs
When experts used these 14 components to determine the effectiveness of current local and national programs, they found that most had access to resources to give to caregivers or links to find pertinent information.
When the programs were part of a residential program, interaction was naturally heightened between professionals and people with dementia. Other programs had less interaction.
It has been shown that caregiver’s burden is lightened when there are more interventions available to assist them.
Most programs attempt to empower caregivers which can be done with training and resources.
Helping caregivers practice good self-care is vital for those caring for people with dementia. The caregiving road is long with little day-to-day relief for family caregivers.
Awareness of the resources and options available for family caregivers and the person with dementia as the disease progresses is the first step in getting your needs fulfilled.
We hope this guide about what is possible to help you on your caregiving journey will help you seek and find support before, during, and after the diagnosis of dementia.